BSI-FASD Biographic Screening Interview for Adults with FASD

Transcription

1 BSI-FASD Biographic Screening Interview for Adults with FASD Lina Schwerg & Sandra M. Ahlert 8th International Research Conference on Adolescents and Adults with FASD Review, Respond and Relate Integrating Research, Policy and Practice Around the World April 19 th

2 Overview Introduction Background The BSI-FASD Translation and Adaptation Evaluation BSI-FASD Diagnostic Process Overview Recruitment of Participants Implementation of the BSI-FASD Results Discussion: Limitations and Recommendations 2

3 Introduction Lina Schwerg BSc Psychologist Master student, University of Potsdam FASD-Fachzentrum Sonnenhof, Berlin, Germany Apprenticeship Bachelor thesis on Executive Function in Youth with FASD Assistant to Gela Becker Co-Therapist in Group sessions for Adults and Youth with FASD Neuropsychological Diagnostics Sandra M. Ahlert BSc Psychologist Master student, University of Potsdam FASD-Fachzentrum Sonnenhof, Berlin, Germany Apprenticeship Research on FASD Whitecrow Village FASD Society Continued research on FASD Master Thesis on Factors for a Successful Adaption 3

4 Background Research Project Development of Group Sessions for Adults with FASD and Risk of Addiction A research project funded by the BMG (German Ministry of Health) Results: 5 Projects 1. Weighting of the Impairments for Interventions, Analysis and Prospects 2. Group sessions for Adults and Youth with FASD 3. FASD und Dann? Self-help book 4. Adults with FASD and similar. 5. Life History Screen BSI-FASD 4

5 Biographisches Screening- Interview für FASD (BSI-FASD) Adapted Version of the English Life History Screen (LHS) 1 1 Grant, T., Novick Brown, N., Graham, J., Whitney, N. & Dubovsky, D. (2013). Screening in treatment programs for Fetal Alcohol Spectrum Disorders that could affect therapeutic progress. The International Journal of Alcohol and Drug Research, 2(3),

6 BSI-FASD Biographisches Screeninginterview für FASD Structured Interview 32 Items 30 Items rated 9 Domains: 1. Childhood History 2 Items 2. Maternal Alcohol Use 3 Items 3. Education 4 Items 4. Criminal History 3 Items 5. Substance Use 2 Items 6. Employment and Income 2 Items 7. Living Situation 2 Items 8. Mental Health 3 items 9. Day to Day Behavior 11 Items 6

7 BSI-FASD Biographisches Screeninginterview für FASD Each rated item has a corresponding Red-Flag-Response Each category has a minimum amount of Red-Flag-Responses required 7

8 BSI-FASD Biographisches Screeninginterview für FASD Screening Results: Who should be referred for diagnosis? (1) Red Flags in all three Key Life History Domains Yes No Yes Yes No No OR 8

9 BSI-FASD Biographisches Screeninginterview für FASD Screening Results: Who should be referred for diagnosis? (2) Red Flags in two Key Life History Domains and two or more Red Flags in the other Life History Domains Yes Yes Yes Yes Yes Yes No No No No No No 9

10 Why bother? In Germany there is a gap between the suspected prevalence of adults with Fetal Alcohol Spectrum Disorder (FASD) and the number of people with actual diagnosis of this disorder. BSI-FASD can help identify those who should be referred for medical diagnosis. Diagnosis can help: Service Providers/ Families Adults with FASD Explain behavioral and functional impairment Form more realistic expectations Adopt compensatory strategies Acquire appropriate therapy Receive necessary and appropriate services Reduce secondary disabilities and adverse life outcomes ) (Grant, Brown, Dubovsky, Sparrow, & Ries, 2013) 10

11 Percent ( N = 12) Why bother? Secondary Disabilities School-leaving Qualification Employment Independent Living Homelessness Imprisonment Placement in a Psychiatric Clinic Figure 1. Secondary Disabilities in a recent German Study (Fröhlich, 2015) 11

12 Translation and Adaptation Step 1 Step 2 Translating the LHS (Grant et al., 2013) into German Retranslating the German version into English to ensure no information / meaning was lost Step 3 Step 4 Adapting items to the German culture Making German items comprehensible by consulting with an FASD-expert Adding B-Notes for hard-to-understand items Example of a B-Note for Employment and Income: Definition of SSI 12

13 BSI-FASD Diagnostic Process: Staff Training & Participant Recruitment Staff Training prior to participant recruitment: In-depth staff training on FASD and the medical diagnosis of FASD Training on the administration of the BSI-FASD diagnostic tool Sensitivity training on how to respectfully interact with FASD adults regarding difficult topics, such as maternal alcohol use 13

14 Recruitment of Participants Participants were recruited from four sources: (1) Paracelsus-Wiehengebirgsklinik Bad Essen: an alcohol and prescription drug rehabilitation clinic N = 122 screened with the BSI-FASD N = 8 (7.2 %) positive screens 4 released early, 1 declined, 1 the doctor was not able to see, 2 completed the diagnostic 14

15 Recruitment of Participants Participants were recruited from four sources: (2) FASD-Fachzentrum Sonnenhof N = with pre-diagnosed FASD 5 with a pre-diagnosed negative result (7 more chose not to participate) (3) Self-help Group for people with FASD N = 3 with pre-diagnosed FASD (4 more chose not to participate) (4) Member of FASD-Deutschland N = 1 with pre-diagnosed FASD 15

16 Diagnostic Process for participants without pre-diagnostic 1 st Diagnostic Step BSI-FASD Prenatal Alcohol Exposure Facial Dysmorphy 1 or more positive results 2 nd Diagnostic Step Growth Abnomalities Microcephaly CNS-Anomalies N = 90 completed this process 16

17 Overall Participant Demographics N = 111 Gender: 74 male (66.7%), 37 female (33.3 %) Age-Range: (M = 46.2, SD = ) Diagnostics: 90 completed the diagnostic process 16 were pre-diagnosed with FASD 5 had a pre-diagnosed negative result 17

18 Implementation of the BSI-FASD Each interview lasted between 5 8 minutes The closer the interviewer stayed to the wording of the interview, the smoother it went All items that participants found hard to understand in the initial wording could be explained by using the B-Notes Overall the interview was easy to implement The option unknown as a red-flag-answer to the maternal alcohol use questions proved very helpful, as many did not know Q: Did your mother drink alcohol while she was pregnant with you? A: I don t know, I was in the womb you know. 18

19 Results Descriptive Analysis Table 1 Descriptive Analysis. N Sex FASD Diagnosis Male Female Negative Positive Negative Screening Positive Screening Total

20 Percentage of Participants Results Screening 100% 80% 60% 40% Overall Red Flag Overall No Red Flag Negative Red Flag Negative No Red Flag Positive Red Flag Positive No Red Flag 20% 0% Childhood History Maternal Alcohol Use Education Criminal History Substance Use Figure 2. Comparison of Red Flag Responses in the BSI-FASD Categories between Participants with Negative Screening, Positive Screening and Overall (Part 1). 20

21 Percentage of Participants Results Screening 100% 80% 60% 40% Overall Red Flag Overall No Red Flag Negative Red Flag Negative No Red Flag Positive Red Flag Positive No Red Flag 20% 0% Employment and Income Living Situations Mental Health Day-to-Day Behaviors Figure 2. Comparison of Red Flag Responses in the BSI-FASD Categories between Participants with Negative Screening, Positive Screening and Overall (Part 2). 21

22 Results Screening Table 2 Comparison of Group 1 (Negative Screening) and Group 2 (Positive Screening) on Categories with Red Flag Responses. BSI-FASD Category Group 1 - Negative Screening (N = 91) Group 2 Positive Screening (N = 20) Childhood History 1 (1.1%) 8 (40%).548*** Maternal Alcohol Use 15 (16.5%) 20 (100%).691*** Education 34 (37.4%) 18 (90%).405*** Criminal History 33 (36.3%) 10 (50%).108 n.s. Substance Use 8 (8.8%) 4 (20%).139 n.s. Employment and Income 53 (58.2%) 16 (80%).172 Living Situations 4 (4.4%) 12 (60%).608*** Mental Health 8 (8.8%) 7 (35%).295** Day-to-Day Behaviors 13 (14.3%) 18 (90%).649*** p <.1, *p <.05, **p <.01, *** p <.001 ϕ 22

23 Results Screening Table 2 Comparison of Group 1 (Negative Screening) and Group 2 (Positive Screening) on Categories with Red Flag Responses. BSI-FASD Category Group 1 - Negative Screening (N = 91) Group 2 Positive Screening (N = 20) Childhood History 1 (1.1%) 8 (40%).548*** Maternal Alcohol Use 15 (16.5%) 20 (100%).691*** Education 34 (37.4%) 18 (90%).405*** Criminal History 33 (36.3%) 10 (50%).108 n.s. Substance Use 8 (8.8%) 4 (20%).139 n.s. Employment and Income 53 (58.2%) 16 (80%).172 Living Situations 4 (4.4%) 12 (60%).608*** Mental Health 8 (8.8%) 7 (35%).295** Day-to-Day Behaviors 13 (14.3%) 18 (90%).649*** p <.1, *p <.05, **p <.01, *** p <.001 ϕ 23

24 Results Screening Table 2 Comparison of Group 1 (Negative Screening) and Group 2 (Positive Screening) on Categories with Red Flag Responses. BSI-FASD Category Group 1 - Negative Screening (N = 91) Group 2 Positive Screening (N = 20) Childhood History 1 (1.1%) 8 (40%).548*** Maternal Alcohol Use 15 (16.5%) 20 (100%).691*** Education 34 (37.4%) 18 (90%).405*** Criminal History 33 (36.3%) 10 (50%).108 n.s. Substance Use 8 (8.8%) 4 (20%).139 n.s. Employment and Income 53 (58.2%) 16 (80%).172 Living Situations 4 (4.4%) 12 (60%).608*** Mental Health 8 (8.8%) 7 (35%).295** Day-to-Day Behaviors 13 (14.3%) 18 (90%).649*** p <.1, *p <.05, **p <.01, *** p <.001 ϕ 24

25 Percentage of Participants Results FASD Diagnosis 100% 80% 60% 40% Overall Red Flag Overall No Red Flag No FASD Red Flag No FASD No Red Flag FASD Red Flag FASD No Red Flag 20% 0% Childhood History Maternal Alcohol Use Education Criminal History Figure 3. Comparison of Red Flag Responses in the BSI-FASD Categories between Participants without FASD Diagnosis, with FASD Diagnosis and Overall (Part 1) Substance Use 25

26 Percentage of Participants Results FASD Diagnosis 100% 80% 60% 40% Overall Red Flag Overall No Red Flag No FASD Red Flag No FASD No Red Flag FASD Red Flag FASD No Red Flag 20% 0% Employment and Income Living Situations Mental Health Day-to-Day Behaviors Figure 3. Comparison of Red Flag Responses in the BSI-FASD Categories between Participants without FASD Diagnosis, with FASD Diagnosis and Overall (Part 2). 26

27 Results FASD Diagnosis Table 3 Comparison of Group 3 (No FASD) and Group 4 (Diagnosed FASD) on Categories with Red Flag Responses. BSI-FASD Category Group 3 No FASD (N = 95) Group 4 FASD (N = 16) ϕ Childhood History 4 (4.2%) 5 (31.3%).348*** Maternal Alcohol Use 19 (20%) 16 (100%).605*** Education 37 (38.9%) 15 (93.8%).386*** Criminal History 35 (36.8%) 8 (50%).095 n.s. Substance Use 11 (11.6%) 1 (6.3%) -.06 n.s. Employment and Income 55 (57.9%) 14 (87.5%).214* Living Situations 6 (6.3%) 10 (62.5%).562*** Mental Health 7 (7.4%) 8 (50%).438*** Day-to-Day Behaviors 17 (17.9%) 14 (87.5%).545*** *p <.05, **p <.01, *** p <

28 Results Screening and FASD Diagnosis Strong correlation: ϕ =.742 (p<.001) Similarities for people with a positive screening and people with FASD All participants had 3/3 red flag responses in maternal alcohol use More than 40% had 2/2 red flag responses in education 50% had 2/2 red flag responses in living situations More than 50% had difficulties in 7+ day-to-day areas 28

29 Results Sensitivity & Specificity Table 4 Calculating Sensitivity and Specificity FASD Diagnosis No FASD Diagnosis Positive Screening 14 6 Negative Screening 2 89 Sensitivity: 87.5% Specificity: 93.7% False positive: 6.3% False negative: 12.5% Correctly identified: 92.8% 29

30 Results ROC Analysis Table 4 ROC Analysis Area under the Curve. Category AUC SE p-value Childhood History n.s. Maternal Alcohol Use *** Education *** Criminal History n.s. Substance Use n.s. Employment and Income *** Living Situations *** Mental Health *** Day-to-Day Behaviors *** p <.1, *p <.05, **p <.01, *** p <

31 Results ROC Analysis Optimal cut-off values: Category LHS BSI-FASD Childhood History 1/1 1/1 Maternal Alcohol Use 2/3 3/3 Education 1/3 1/3 Criminal History 1/3 1/3 Substance Use 1/2 2/2 Employment and Income 1/2 1/2 Living Situation 1/2 1/2 Mental Health 2/3 1/3 Day-to-Day Behaviors 5/11 5/11 missings? little informative value Sensitivity =.875; Specificity =.568 Sensitivity higher when using 4/11 31

32 Discussion Conclusion: BSI-FASD is able to correctly identify: 87.5% of the people affected by FASD 93.7% of the people without FASD 92.8% overall Areas which illustrate significant and strong connection to both a positive screening and an FASD diagnosis include: Maternal Alcohol Use Living Situations Day-to-Day Behaviors 32

33 Discussion Conclusion: Areas which illustrate little or no significant connection to both a positive screening and an FASD diagnosis include: Employment and Income Criminal History Substance Use 33

34 Discussion Limitations and Recommendations: Sample size further evaluation necessary Difficult to reach participants with suspected FASD Diagnostic challenges: No standard diagnostic guidelines exist for adults in Germany It s difficult to clearly specify standard facial expressions and growth characteristics Proof of prenatal alcohol exposure is difficult 34

35 Discussion Limitations and Recommendations: Cut-off values Using different cut-off values for categories Verify item-based cut-off values Consider cultural differences Living situations in childhood School subject which caused the most problems 35

36 Thank you for your attention! Feel free to contact us should any questions arise: Lina Schwerg Sandra M. Ahlert Please take a moment to evaluate us. 36